“THEY’RE NOT READY for palliative care!” I’ve lost count of how many times colleagues have said this about their patients while I was working on our hospital palliative consult service. Surgeons have chased me from the bedside with, “I haven’t given up on them yet!” Other physicians have eyed me and my team with suspicion: “Why are you seeing this patient?”
Many doctors still seem confused about when to refer to the palliative care team. We are commonly consulted to get a DNR or to initiate comfort care, but we can offer so much more—particularly when we’re called in early.
For any stage of illness
Hospice care is palliative care for patients with a terminal diagnosis. But palliative care approaches are not limited to the terminal phase of any disease.
We need to dispel the common perception that palliative care is “giving up.”
Palliative care is specialized care—to manage symptoms and improve patients’ quality of life—at any age and any stage of serious or chronic illness. And current recommendations from multiple specialties endorse earlier palliative care involvement. That’s because patients who receive concurrent palliative care have less pain and depression and, in some cases, live longer than initially anticipated.
The American College of Surgeons Commission on Cancer, for instance, identifies palliative care as an essential component of cancer care, one that should be available from diagnosis through treatment surveillance and bereavement. 1
The American College of Cardiology advocates for the “seamless integration of palliative care principles throughout the heart failure management continuum.” 2 Yet survey results presented during the American Society of Nephrology’s Kidney Week in 2021 indicate that only 24% of patients on dialysis for end-stage renal disease could recall having discussions about alternatives such as hospice prior to beginning dialysis. 3
We need to dispel the common perception that palliative care is “giving up.” Instead, after careful assessment and dialogue, we are often the ones to advocate for those seeking aggressive management. I have had, for instance, cases where discussions aided by appropriate translation services uncovered serious miscommunication.
In one case, we were consulted to address comfort care for a patient in liver failure. Upon meeting with the family, however, we realized that the patient was already established with a transplant team. Rather than comfort care, we helped transfer her to a university hospital for transplant surgery.
Starting tough conversations sooner
But too often, we are called in late, when the situation actually has become terminal and treatment options exhausted. We arrive to find an incapacitated patient and family members with the proverbial “deer in the headlights” look.
When I ask about conversations they’ve had that could help us understand care preferences, the usual response is, “I have no idea, we never talked about it.” Patients commonly tell me they don’t want to be a burden to their families—although I now believe that “not talking about it” is one of the greatest burdens that families have to bear. We end up relying on family members to make decisions they are not prepared to make.
That’s one big benefit of consulting palliative care sooner, not later. In my work, I think of the unit of care as the family because serious illness affects them all, often changing many of their roles.
Early consultation gives us the time to develop a rapport, get conversations started, and plant the seeds for considering treatment and quality-of-life preferences. That allows us to complement the treatment plan and support patients and families.
During my first engagement with patients, I assess their capacity for medical decision-making and prognostic awareness. How well do they understand their prognosis? Is their illness curable or will treatment offer more time?
By helping patients gain a better prognostic understanding, they can match treatment preferences to personal goals—if those discussions begin before a crisis. That gives patients time to consider who can serve as their surrogate if a complication affects decisional capacity, what situations or procedures they want to avoid, and what “quality of life” means to them.
Help for primary teams
When family members are present, I also assess the family dynamics and explore everyone’s understanding of the medical situation, treatment options and prognosis. Usually, people are at varying levels of acceptance and comprehension; palliative team members can help with that. We can also respond to any emotions that arise, and strong emotions come with the territory.
And being consulted early allows me to have a conversation about hospice before patients actually need it. I introduce hospice with, “There may come a time when you want to avoid the ER, re-hospitalization, or another surgery or treatment trial.”
Early palliative care helps normalize our role, and it allows us to improve symptom management and goal-concordant care. It also helps smooth the way for patients’ primary providers and gives us the time it takes for tough but essential conversations.
Aldebra Schroll, MD, is a hospice-palliative care specialist based in Chico, Calif. Dr. Schroll is also a physician writer who is taking a break from patient care to focus on her writing interests.
1. The American College of Surgeons Commission on Cancer, 2020 Standards and Resource
2. American College of Cardiology, Palliative Care in Heart Failure
3. American Society of Nephrology, Palliative and Conservative Care Consultation in Hemodialysis
Published in the March/Aprill 2022 issue of Today’s Hospitalist.